Nolan had a wonderful clinic visit today! All his bloodwork looks great! The only thing the topotecan (chemo) seems to have affected is his platelets. They were 262,000 a week ago and now they are 62,000. No need for transfusion right now but will keep an eye on it with some follow up labs next week.

The doctor and I talked a little about chemo and we may add two more drugs eventually but first we have to get Nolan weaned off of decadron because it doesn't work well with one of the chemo's.  He was started on decadron (steroid) In the hospital to help with inflammation in the lungs and anything that could be going on in the brain.  So far he has done great with the decadron weaning and it will probably be another 2-3 weeks before he's completely off.  One of the drugs we discussed is avastin which he's done for years and has been off of for a couple of months.  The other is an oral pill that I don't know much about yet.... 

Please be in prayer that the decadron weaning goes smoothly and he is able to start these new chemo's. I always feel the chemo works better in combinations. I could be wrong but that's what's he's always done.... 

Thank you for all the birthday wishes!! Nolan had an awesome day :-)

Brittany 

Nolan finally made it home from the hospital this past Saturday.  I know I should have updated but things have been chaotic.  Nolan is doing good but since he's been in bed for the past month he has totally lost his ability to walk unassisted.  Nolan doesn't seem to upset at all! He just tells me he's going to work on getting stronger everyday.  He's as happy as can be no matter what situation he's in. I feel so blessed that he has such a good attitude :-)  In the meantime since he can't climb stairs we have had to move him into my Mom's house.  It's been hard to be apart from him at night but my Mom lives right in front of us and I know he's safe and well cared for.  Nolan seems to take the move just as well as everything else and he's ok with it. We are happy to be home and so thankful! Nolan is just a miracle.  The only way I can explain how he came through what he did was God having his hand on him.  WOW! The power of prayer is amazing!!!

Nolan will have clinic Friday for his hospital follow up and to check all his labs.  His phosphorus and Magnesium have continued to stay low but we are giving him supplements in hopes everything will look good when he goes in Friday.  We also probably discuss whats next with the chemo.  Should we continue what we are doing or look into other treatments.  Not sure yet but praying we will make the right decisions.

Tomorrow is a big day for Nolan!! He will be 11 years old!! Please wish him a Happy Birthday  and I will read all the messages to him :-) :-)

Thank you all for the wonderful love and support!!

Brittany

Nolan really enjoyed getting to hold a little bunny named Thumper in the garden at Scottish rite yesterday. He loved every minute of it :-)

Today is the last day of chemo for this round!! Woohoo!!

We are getting a bi pap machine delivered to the hospital today and tonight they will work on teaching me how to use it and make sure he tolerates it ok. If everything goes good he will be able to go home tomorrow!! So excited!!  In a few weeks they may do a sleep study to see if he will continue to need the bi pap.  He's doing so good I have a hard time believing he will need it for long :-)

Jesus looked at them and said, "with man this is impossible, but with God all things are possible." 

Matthew 19:26

-Brittany 

Sorry for the lack of updates but Nolan is doing awesome!!

 He's been working with physical therapy on walking.  It's going to take a little while for him to get back to his baseline but Nolan is ready and willing to work for it!!

He's totally on room air during the day and the pulmonologist has cut back on his breathing treatments and bi pap settings (still using the bi pap at night while sleeping).  He will have an x-Ray in the morning to make sure his lungs are still healing nicely.  I just never expected this kind of turn around and I don't think the doctors did either.  He will get chemo today and tomorrow then we can hopefully talk about going home :-)

Thank you for all the continued prayers and support! You all have been so amazing! 

I also want to thank all those that donated to Nolan's liquid hope fund! Wow! 

http://www.indiegogo.com/projects/nolan-blake-liquid-hope-project

Just can't believe the wonderful turn out we have had!

Thank you! Thank you! Thank you!!

Brittany

Awesome progress!

Nolan finally got some good sleep last night and he is still sleeping right now :-) 

He really needed that because he hasn't been resting well at night....

His blood gas looked good enough to reduce the oxygen on the bi pap at night but they are not going to reduce the pressures yet.  He is down to 1 liter of oxygen during the day but can go several hours with just room air.  He is still doing amazing and is really getting bored with the ICU....lol! We are hoping to see a regular room soon!

Thank you for your continued prayers!!

Brittany 

Nolan is doing amazing!! He is just surprising all the doctors here with his progress!

He went several hours this morning on room air with no problems :-) He did end up going back on oxygen because we want to slowly wean him to prevent any problems but he's only on 2 liters.  At night he is still on the bi pap but he will get a blood gas in the morning to see if we can start backing off of that.  All in all he is doing incredibly good!! We are hoping he will be out of ICU by Monday and in a regular room but then more decisions come.  His oncologist is talking about doing another round of chemo before he goes home but I just don't know yet....

Please continue to pray for guidance with all the decision making process.  It can be exhausting and I want to do what's right for Nolan.

Thank you all!!

Brittany 

Nolan is still in the ICU and still on the bi pap but he's doing good! There hasn't been many changes.  All his lab work has been great! He had a small issue yesterday that they were concerned about but has since resolved. Now it appears he has a little mucous plug in his right lung again causing some more problems.  We are just trying to be very patient and hope that Nolan will continue to get better with each day.

 We haven't decided on the next step with chemo yet.  His doctor and I discussed it a little and decided we would wait till he's out of the ICU first.  So please be in prayer for guidance with these next steps in Nolan's treatment. 

We have no idea how long it's going to be before Nolan gets out of the hospital but our goal is for him to be home for his birthday (January 23rd) and maybe a special trip. We will see ;-)

Brittany

Nolan was finally extubated! He is currently on the bi pap and will try hi flo oxygen in a little while.  Even if he can't stay on the hi flo oxygen at least it will give him a break.  One of the respitory therapist described bi pap as feeling like you have your head out the window while you are driving down the highway :-/ Nolan just does not rest well when he's on bi pap and I can totally understand why.  I'm just praying for improvement and to get him to regular oxygen so he can get out of ICU...

His blood counts are still good and improving day by day, his crp levels are still coming down and his magnesium, calcium and sodium are all still stable :-) just need for his lungs to continue to improve!!

~Brittany